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CagleBaby
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Cystic Fibrosis
CagleBaby
member
Anyone have a vest for your kiddo? If so what kind to they have?
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CagleBaby
member
Re: Cystic Fibrosis
We just got our vest about a month ago. We tested both in clinic and the Hillrom is SO much quieter and a little easier to move around.
In the CF community, there is a good deal of discussion about this. Some will tell you that the Hillrom vest hoses pop off. We've had it for about 6 weeks now and have not had a problem with that.
Other than the noise level and the way the hoses connect, there wasn't much difference for us between the two.
Of course, we're still waiting on the bill...
I will say that we've had a smooth transition to the vest, albeit with LOTS of Barney. It's the only time we let LO watch it!
We have dark blue hoses, but as far as I know, there isn't a choice.
From what I understand, they've changed the hoses and the older hoses were much worse about popping off. We've only had problems when 1.) we didn't put the hose in all the way (if you twist it in, it stays put) and 2.) last night, when DS thought it was fun to JUMP with the vest on. So, I don't put either of those on faulty design!
Good luck with getting approval! I can tell you that we were approved on Monday to order the vest, we had it on Wednesday, trainer came on Friday and we were on our way!
We were very fortunate to not have any issues with our insurance...of course, we still haven't gotten a bill or any idea how much out of pocket we're going to have to pay.
Our clinic does a good job of working through the insurance stuff too, so we haven't had many surprises.
The jumping with the vest on was quite ridiculous, but that's his new favorite skill, jumping. Jumping constantly, everywhere, all the time!
How did the fitting/first time go?
Hope it went well!
We have clinic tomorrow so I've got CF on the brain tonight!
It went really well. She loves it. She laughs everytime we put it on her.
I am glad it went so well.
On another note we just found out she cultured pseudomonas for the first time.
we start Tobi tomorrow.
She will be one on July 11th. I hadn't heard that it is common around this age.
I hope we can knock it out the first time. This stuff is $$$$. With out insurance it would have been $6,041
Our LO cultured PA when he was 10 months old. It's VERY common for CFers to culture it. Luckily, it seems to get out with quick treatment. We too did Tobi for a month.
It isn't fun, but it worked. At that time, we were doing 45 minutes of nebs in the morning and 40 minutes at night with Tobi, Albuterol & HTS.
We're waiting now for culture results...should have them by the end of the week. I hate this week!